Sarcoma in children and young adults

Sarcoma represents roughly 15 percent of all cases of childhood cancer diagnosed each year, says Joan Darling, president of the Sarcoma Alliance. But you might not know it by the way statistics have been presented during Childhood Cancer Awareness Month.

The American Cancer Society lumps different types of leukemia together, for example, but separates different types of sarcoma. That makes it harder to see the impact of sarcoma on young lives.

But Darling sees it. Since 2001, she has volunteered as a patient advocate with the Children’s Oncology Group (COG), the cooperative that designs and implements clinical trials for childhood cancers. A biologist who lives in Lincoln, Neb., she also helps manage the Rhabdo-Kids mailing list for the Association of Cancer Online Resources.

Darling sees more than statistics – she sees her daughter, Ali, diagnosed with rhabdomyosarcoma at 13, now a young lawyer on the board of the Sarcoma Alliance. Here’s an excerpt from her daughter’s story:

“Having cancer absolutely changed my life. I don’t think it changed who I am, but I do think it changed my view. I will forever be plagued by the side effects of the drugs that saved me, and I still get nervous when I find any lump or bump. But, most of all, I love and cherish the qualities I’ve acquired through the experience. It’s been said so many times in so many ways, but it’s best put in one word: Perspective.”

The Alliance plans to expand its sections on children and young adults as well as adding more personal stories.

One will come from Joanna J. Burgess, who won the Great Comebacks Award, South Region, this month. She was diagnosed at age 3 with rhabdomyosarcoma and got a urostomy to replace her bladder. Radiation therapy caused colitis, and she later had to have a colostomy. She became a registered nurse who specializes in wound, ostomy and continence care.

“My efforts to help others have been a passion and an important part of my own recovery,” says Burgess of Apex, N.C. “From my experience, I think I understand the special challenges people face when they are living with these diseases and when they have ostomy surgery. I want people to know that someone understands what they are going through.”

Ashley Grennell of Groveland, Fla., hopes her story will help others see that they can live every day to its fullest despite a bad prognosis. Diagnosed with a sarcoma called malignant peripheral nerve sheath tumor, she went into hospice this month at age 26 after multiple surgeries and rounds of chemotherapy and radiation.

“I knew four years ago that we’d never get ahead of it,” says Grennell, whose last wish is to find the money for a funeral. “But I had four more birthdays, four more Christmases, four more years with my family. It was worth it.

“People always ask me, ‘How do you stay so positive? Every time I see you, you have a big smile on your face.’ You have two options. You can curl yourself in a ball, be miserable and waste your life, or you can say, ‘Yeah, this is the hand I’ve been dealt.’ You deal with it, and you live your life.”